Why I Participate in Clinical Trials

 In Links to Lupus News, Story Sharing Project

by Stacey Kennedy Connor

Currently I have had lupus now for 20 years, 20 years of going through different clinical trials. I’ve had lows, like heart, kidney, lung issues, my husband and I have had a miscarriage, weight gain due to prednisone, pain, fatigue, and the list goes on. With that, I have also had highs, many highs that I am extremely thankful to have experienced like earning my Masters Degree in Counseling, working in the educational system for over 10 years, getting married and still being able to enjoy time with family and friends.

Many of these highs can also in part be attributed to the research that has been done in trying to understand lupus. Having effective medication that works and allows me to not only live but try to enjoy my life is a game changer. Being a part of and benefiting from the many clinical trials for lupus has really changed my life for the better.

While there are advancements being made, there is still work to be done, there are still people being diagnosed with lupus who are looking for effective treatment, and people who have lupus and are struggling with finding the right treatments. This is why clinical trials are so important and our participation in them even more so!

Clinical trials, given the careful measures taken, have proven to me to really be an opportunity for researchers to learn about the complexities of lupus and work hard to find treatments specifically for lupus patients (so far we have some out there!) and help us have the best quality of life! I have and am currently participating in clinical trials. My main reason for doing so is to assist researchers in helping the men and women in the lupus community find treatment or a cure! I even believe so greatly in the cause, that I also do some consultancy work with research companies to examine clinical trials for lupus patients!

I was once asked by a friend (with lupus, who was still deciding if she wanted to participate in clinical trials) why I am so dedicated to clinical trials. My response was simple- I believe clinical trials are a part of the bigger picture in helping to find a cure for lupus! I love having these conversations and walking my fellow lupus buddies through the different types of clinical trials and ways to engage – it is not always about taking a new pill/treatment sometimes it’s about assessing how you feel, analyzing current medications, and the list goes on!

It is my hope that current clinical trial practices are able to discover a treatment that is effective for all lupus patients or even a cure, and that it happens in my lifetime! However, if it doesn’t, I still have great joy in knowing that the generations to come will not have to suffer with lupus as greatly as I have.

Perhaps you want to know more about clinical trials or the trials that I am currently in or have been a part of, please don’t hesitate to reach out!
All my best,

Find out more about clinical trials here and at clinicaltrials.gov.

If you would like to find out more about clinical trials contact the Lupus Society of Illinois at 312-542-0002 or email [email protected].

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